Stages of involvement
In August 2021, the SIREN UKHSA team were successful in securing additional UKRI MRC funding to establish the SIREN Consortium. This consisted of 12 research partner organisations, including the BSI, who were pivotal partners to form the PIP.
The British Society for Immunology is proud to collaborate with UKHSA in leading participant involvement within SIREN. We recognise the importance and impact involvement can have on research, influencing the relevance and quality of COVID-19 research.
Recruitment for the Phase 1 SIREN PIP began in late 2021, over a year after the first participant was recruited into the study. The delay was in part due to the long recruitment window offered by the study, with NHS sites across the UK joining the study at different time points, and recruitment into the study ending in March 2021. Phase 1 of the SIREN PIP began in January 2022 and ran until August 2022. Phase 2 of the PIP began in October 2022 and ran until March 2023. Phase 1 and 2 involved six meetings.
The PIP was transformative in how we approached cohort retention activities – enabling us to expand from participant engagement to include participant involvement.
Approach to PIP recruitment
Recruitment in Phase 1 was announced in a study-wide participant newsletter. The participant newsletter was sent out to all SIREN participants via email or text, depending on their communication preferences stated at recruitment. The approach to PIP recruitment expanded for Phase 2. It was announced during a live webinar open to all participants and highlighted in multiple issues of the participant newsletter. Each participant in SIREN is hosted by one of 135 NHS organisations, and for Phase 2 recruitment these organisations were asked via the regular monthly site meetings to circulate the opportunity among their participants.
Information about the PIP was hosted on a dedicated webpage which included the following points:
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The definition of the PIP.
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Responsibilities of PIP members.
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Ways of working including a code of conduct.
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Details of the honorarium provided to PIP members.
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A link to a Microsoft Form for participants to express their interest in joining the panel. The form collected contact and demographic details.
It seemed simple to do…I felt like I was giving something back
PIP expressions of interest were reviewed by the BSI and a shortlist of candidates was produced. For Phase 2 particular attention was paid to whether a participant was active in SIREN and providing regular samples and survey responses, to ensure the PIP could offer live feedback on how changes to the study impacted their experience. Applications from people from ethnic minority groups, people with disabilities, people with gender diverse identities and from different staff groups and geographic locations were actively encouraged to better reflect the variety of experiences encountered by participants.
Diverse group of people, fab to see people from across the UK and from different roles.
The BSI held informal conversations with shortlisted individuals over Zoom, to better understand motivations for joining, ensure individuals could commit to the time requirements involved and to confirm individuals would be willing to provide open and honest feedback on the topics discussed in meetings.
Having both delivered the SIREN study and participated in it, I was keenly aware of the difficulties encountered in both participating and delivering the trial, so it felt really good to be asked for my experience to support the development of the next stages
PIP members
Seven study participants were recruited for Phase 1 of the PIP and 10 for Phase 2. Two members of the Phase 1 panel continued into Phase 2, selected based on interest to remain and active study status. SIREN PIP members represent a range of professional groups including frontline staff (clinicians, midwives, nurses), those working in administrative or executive roles, and staff working in the estates, porters or security staff groups.
Running the PIP
Meetings were held on a six-weekly basis and took place via Zoom to enable whole-group discussion. Each meeting was co-chaired by the BSI and a volunteer participant co-chair. The length of meeting varied from 1.5 hours to 2 hours.
PIP meetings aimed to provide an inclusive environment, encouraging everyone to share their experiences and perspectives; in line with the original intention of encouraging active participation. Panel members were asked to abide by the BSI code of conduct.
With trepidation, I attended the first meeting. Immediately, there was great warmth & inclusiveness. I felt that my thoughts & opinions did matter.
As a group we became more like critical friends and mechanisms were set in place enabled us to express our concerns, thoughts and observations.
Availability for meetings was assessed via Doodle poll and the date and time chosen was based on highest availability. Phase 2 PIP introduced the option of evening meetings based on feedback from participants who struggled to attend meetings in working hours.
The periodic meetings held for PIP members kept us updated about the progress of research, gave us the opportunities to address our queries, reflect on the challenges, and make suggestions to incorporate in the research process. This gave a feeling of ownership of the research and made me want to remain a dedicated volunteer.
Members were contacted in advance of each meeting with an agenda and briefing documents. At the end of each meeting PIP members were offered an honorarium of £50, in line with the National Institute for Health and Care Research (NIHR) payment guidance [12]. Minutes and agreed actions were shared following each meeting.
Meeting agendas were coproduced by BSI and a UKHSA SIREN team member. Meeting topics were based on expressions of interest from SIREN Consortium researchers. Feedback from PIP members also helped decide meeting topics, with a particular focus on inviting back presenters to share how feedback from the PIP helped shape their work.
The meetings were well organised with plenty of time for discussions, papers always sent out in advance, and a comprehensive set of minutes were circulated afterwards.
PIP members were invited on an ad hoc basis to contribute to additional SIREN study activities. This included presenting at SIREN participant webinars, at the National Core Studies Immunity Patient and Participant Involvement (PPI) panel and being filmed for SIREN engagement videos.
There were spin off opportunities and I have been involved in writing an article and being videoed for the SIREN story
I really enjoyed the interactions with group members & the unexpected opportunities to represent SIREN & the PIP at other meetings
A timeline of SIREN study and PIP activity can be found in Fig. 1.
Measuring PIP impact
Impact was measured through qualitative feedback gathered from researchers who presented at the PIP. Following attendance, researchers were invited to present at a further PIP meeting to provide an update on their work and how feedback from the PIP was incorporated.
Even more powerful was the ‘you said, we did’ element to meetings in which the same researchers would return and tell us how they had utilised our feedback and taken on board the issues we had raised to improve the study aims and plans. This made me feel like we had really made a difference and had not only been listen to but been heard.
Anonymous qualitative feedback was gathered from PIP members following meetings via an online tool called Padlet. Questions enabled free text responses and included what went well with the meeting and what could have been better.
Anonymous feedback via the Padlet app was excellent & led to improvements in the meetings themselves.
Qualitative and quantitative feedback from PIP members was captured at the end of each phase. Feedback was gathered verbally during a group discussion and via an online form which could be completed anonymously. Feedback from PIP members was incorporated in changes made between PIP phases.